{"id":1315,"date":"2016-09-02T08:01:44","date_gmt":"2016-09-02T13:01:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1315"},"modified":"2016-09-02T08:01:44","modified_gmt":"2016-09-02T13:01:44","slug":"melanie-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2016\/09\/02\/melanie-2\/","title":{"rendered":"INDIVIDUO CON LGMD: Melanie"},"content":{"rendered":"

Entrevista a LGMD Spotlight -\u00a0<\/strong>09\/02\/2016<\/strong><\/p>\n

\u00a0<\/strong><\/p>\n

Nombre<\/strong>: Melanie\u00a0 Edad<\/strong>29 a\u00f1os\"LGMD2i<\/a><\/p>\n

Pa\u00eds<\/strong>: Alemania<\/p>\n

Subtipo LGMD<\/strong> : LGMD2i (tipo heterocigoto)<\/p>\n

 <\/p>\n

\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n

Me lo diagnosticaron a los 4 a\u00f1os mediante una biopsia muscular.<\/p>\n

\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n

Siempre me ca\u00eda cuando intentaba correr o subir las escaleras. Eso me causaba muchos moratones y cicatrices. Adem\u00e1s, no pod\u00eda levantarme del suelo por m\u00ed misma. Estos s\u00edntomas ya se manifestaban alrededor de los 2 a\u00f1os.<\/p>\n

\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n

No, soy el \u00fanico de mi familia con LGMD.<\/p>\n

\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n

El mayor reto es hacer entender a la gente que no soy demasiado vago para hacer las tareas cotidianas, sino demasiado d\u00e9bil para hacerlas por m\u00ed mismo. Otro reto para muchos de nosotros es aceptar que la silla de ruedas es tu mejor amiga.<\/p>\n

\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n

\u00a1Hay demasiados logros! \u00a1Vivir una buena vida con LGMD es un logro en s\u00ed mismo! En mi blog (www.littlemissturtle.com<\/a>) Escribo sobre todos mis logros y aventuras sobre ruedas.<\/p>\n

\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n

Crec\u00ed con LGMD. Me hizo una persona muy fuerte. Lidiar con una enfermedad progresiva que causa debilidad y atrofia muscular siendo plenamente consciente de ello es un reto exigente que aprecio cada d\u00eda de mi vida. Hace poco dej\u00e9 de trabajar para tener m\u00e1s tiempo para hacer todas las cosas que me gustan. La LGMD me ense\u00f1\u00f3 a tomarme las cosas con calma. Disfrutar m\u00e1s, preocuparme menos, ser positiva y pasar todo el tiempo posible con mis seres queridos. \u00a1Ese es mi camino!<\/p>\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n

La LGMD es una enfermedad rara y delicada. No puede compararse con ninguna otra enfermedad como la esclerosis m\u00faltiple (EM), etc. Es importante escuchar atentamente a la persona que padece LGMD cuando pide ayuda, para evitar hacerle da\u00f1o en el proceso.<\/p>\n

Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\n

Me levantaba sola de la cama, me vest\u00eda y sal\u00eda a dar el paseo de mi vida. Caminaba todo lo que mis pies me permit\u00edan.<\/p>\n

Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD Spotlight interview –\u00a009\/02\/2016 \u00a0 Name:\u00a0 Melanie\u00a0 Age:\u00a0 29 yrs. 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